Of Grief and Fear

Like most people, I have a few phobias, but there is one particular terror that makes me tremble to my soul.  I usually don’t think about it deeply, though I do pray five or six times a day that my fear is never realized. I keep it at the surface, even when I pray, because it is too awful to delve into.

I am terrified of leaving my children before they are fully independent.

Does anyone expecting a child truly consider the question, “What if my child is orphaned?” What are the odds, after all? But, when one parent dies when the children are young, this weighty question becomes much more real.

When I disclosed this fear to a friend, he said. “You have a will, right?” Of course.  If something happened to me, would my children be raised by loving and good people? Yes. But it wouldn’t be me, and that would leave my children with terrible holes in their hearts.

My husband died of complications of cancer treatment when our children were 4, 6, and 7. He was in treatment for a good part of the 5 years prior to his death.  We discovered he was ill before I’d even taken the home pregnancy test to confirm we were expecting number 3. The two youngest do not really remember their father, despite my constant efforts to reinforce memories. This breaks my heart.

One of my friends aptly describes our family as “a pack.” When your kids are not legally old enough to be left alone, there is no reasonable choice but to take them with you everywhere.  Sure, I could hire a babysitter, but would it really be effective to get all 3 kids in the car, go pick up the babysitter, bring them all home, go grocery shopping, go home and unload, pile everyone back in the car, and drive the babysitter home? Nope. So, they go with me, everywhere. Efficiency is key when you are time limited.   

Why am I time limited? Having 3 children who, sadly, are not legally permitted to work all day in sweatshops to support themselves, I must work full time. In the movies, the frenzied life of a working parent involves arguing with people on a cell phone from home while a child hangs on to your leg as you load perfectly bleached whites into the dryer, leaving you ample time to make dinner from organic vegetables harvested from your garden, help Junior with his science project, work out, direct the school play, coach soccer, deliver meals to invalids, refurbish the house, march for world peace, and sew the children’s wardrobes from self-designed patterns. In my world, it involves spending 50 hours a week as a ball of stress in an office, barely fitting in dinner, homework, and baths before bedtime; spending Saturdays driving in carefully orchestrated circles, depositing and fetching children from various sports activities, lessons, birthday parties, and school events, while trying to fit in errands, grocery shopping, and an occasional bathroom break; and reserving Sundays for worship, laundry, bill paying, school projects, and (very occasionally) seeing family or friends. 

So, we are a pack. Our lives are a jigsaw puzzle of activities that all must fit tightly together to make the picture. Though I’m usually exhausted, I wouldn’t trade a bit of it. I adore my children. And, due to their age and the fact that I am their sole parent, I am, at present, the center of their world.

Twelve years ago, one of my husband’s fraternity brothers died of cancer, leaving behind his wife, Julianne, and their two babies.  My husband and I did not have children until several years later. When my husband was diagnosed with cancer, Julianne was immediately on the phone coaching me through the initial terror. She repeated the words of encouragement that I had offered when her husband, John, was diagnosed, and told me how those words and my faith in them had lifted her many times. She told me that my non-judgmental ear when she was struggling with practical and emotional burdens had offered her relief from the expectations of others. Indeed, we’d had frank and lengthy discussions about pressures and awkwardness of uncoupled life and parenthood, but I hadn’t realized how much it had meant to her. And, as Julianne disclosed her feelings during and after her husband’s demise, she unknowingly prepared me for my parallel future experience.  By then, she had become an example of triumph over fear and struggle that I desperately needed to see.  At different critical moments, we’d given each other exactly the right support.

When last I spoke with her, our conversation led us to disclose a shared wish, our deepest and most profound desire as solo mothers:  To see our children through to full independence.  This was not spurred by any particular concern. It just came up.

On February 17, Julianne died at home of a stroke. Her children found her. Their earthly pack was broken.  My heart aches for them intensely.

It would be a lie to pretend that Julianne and I were best buddies. We weren’t. We didn’t call each other weekly or hang out having coffee on Saturday mornings.  We shared a common bond and engaged in meaningful conversations, usually at social gatherings.  But, that connection of similar life experience, overlapping circles of friends, and a 20-year history makes the loss of Julianne very hard for me. She bravely walked down a difficult path that neither one of us ever would have chosen to tread, giving me courage with each of her footsteps as I walked a few paces behind.  I realize that my grief is based in my identification with her life. Grief, after all, really is about one’s own loss.

Julianne told me that when people called her “brave” after John died, she thought, “What alternative do I have? That’s not brave, it’s just doing what you have to do.” Like her, I, too, learned that lesson the hard way.

Julianne is a powerful soul. One last time, she blazes an immensely difficult trail, not by her own design, but because that is simply what is. Her children, during this tragic experience, have shown that the content of their characters, like their mother’s, includes faith, determination, and wisdom. They will live extraordinary lives. Through them, Julianne continues to demonstrate that you just do what you have to do. As I reflect on this, I do not feel brave, yet my terror begins to recede.

For a wonderful tribute to Julianne, read this article by her former neighbor, Robert Nozar.

Thank you, Dr. Pohlman

Here's a post a wrote months ago, but never published. I still had a few tweaks to make. Then, the hubbub of a corporate restructuring, holidays, and other major events dominated my time and thoughts in the past few months, and this post remained unfinished as I neglected my blog. Better late than never.

* * *

It was a difficult day at work today. I had to take a half day of vacation because my daughter was sick last night and I got no sleep. When I got to work, a press release made this 25-year employee of Energizer want to consume about 10-lbs of Belgian chocolate (though I settled for a vegan cupcake provided by my boss instead), and a friend called my attention to an article that made me openly weep. As there is little I can control to change illness or corporate direction, I'll focus on the article that made me weep. An oncologist at the Cleveland Clinic wrote a heartfelt article about closure, both for a deceased patient's family and for himself as the patient's doctor. After I read it, I realized that, although I verbally thanked my late husband's medical team, I never formally showed my gratitude.

It is in my control to change this, right now.

First, a little background: After a 5-yr. tug of war with mantle cell lymphoma, my husband succumbed to pneumonia following a donor stem cell transplant in 2010. He was both a patient at the Cleveland Clinic and a 25-yr. employee. When he was first diagnosed, everything we read noted a 3-yr. life expectancy. Martin lived 5, about half of which were pretty much normal.

Thank you, Dr. Brad Pohlman. You will always be my family's ultimate hero. You had enormous patience with our overly detailed updates and endless lists of questions. You couldn't hide your glee when the labs were good, and I will never forget the hug you gave me when it was the beginning of the end. We chose you for your brilliance and medical reputation. It was your engagement in our family's well-being, however, that made us truly grateful we made that choice.

Thank you, Karen Sands, Nurse Coordinator. You scheduled, coached, trained, managed, ran interference for, informed, celebrated with, was outraged with, laughed with, comforted, and generally held proverbial hands with us through everything. You gave us hope, cleaned up messes, and were a constant source of compassion.

Thank you, Dr. Alan Taege. There were a lot of infections in those years, and you knew what to do about them. But, most of all, I cherish the conversations we had in the ICU as things were going badly. You spoke from the heart, and it bolstered my waning confidence in my own decisions. You helped me hold true to the plan Martin and I had, and our motto of "no regrets."

Thank you, Dr. Rendell Ashton. I was a demanding caregiver, yet, you always were patient. You assumed I could keep up with the medical explanations and treated me as a competent partner in my husband's care, never projecting on me the false image of the deluded wife too desperate to see when the jig was up.  And you called me, personally, after the autopsy results were in, which was truly unexpected and most kind.

Thank you, Dr. Ron Sobecks. You always called personally with test results, answered our endless questions, and seemed to be on task 24/7. It was gracious and thoughtful of you to send a note of condolence even though Martin was no longer your patient at the time.

Thank you to all of the phenomenal nurses in ICU, including Megan, Kelly, Mandy, Sasha, Jamie, Margaret, and Jackie, to name a few. Thanks to the nurse who seemed to be sent straight from heaven to guide me through Martin's last moments. Thanks to Joe the Super-Respiratory Man, and to the rest of the crack team of respiratory therapists in ICU. Thanks to the med techs, especially the ones who sneaked me coffee (I won't rat you out, but you know who you are...and you ROCK!).  Thanks to all of the great nurses in the transplant ward who fed our kids graham crackers and cheerfully knew how to make taking 7000 tubes of blood at each admission seem almost fun. Thanks to the nurses in Taussig, who admired Martin's shoes, laughed when he wore a mismatched pair, picked him up when he fell, dealt with chemo drugs and the unfortunate effects of nausea, and kept what could have been dismal times as pleasant as possible. Thanks to Dr. Josh, the resident, who befriended us both and brought a fresh helping of youthful enthusiasm along with his medical skill. And thanks to all of the other oncologists in Hematologic Oncology and Blood Disorders, transplant docs, and infectious disease docs who treated Martin at various times when he was an inpatient, and all of the staff who did their utmost to help a daddy have the most quality time with his three babies as possible in his all-too-short span of life. I wish I could call all of you out by name.

The Cleveland Clinic is one of the top hospitals for cancer care, with the survival statistics to prove it. Medically, it is the place to go. But just as important, Taussig's elite cadre of medical professionals really and truly care. It is not only their jobs, but clearly their personal missions, to save the lives--or at least as much quality of life as possible--for the people in their care. Nothing impersonal or arrogant in these oncologists; the same docs who treat world leaders, Olympic athletes, and celebrities call even their less celebrated patients personally with test results. Until my husband got cancer, I had never known a doctor who ever called personally with test results. Ever.

Someday, when the kids are old enough to stay home by themselves, I will find a way to help in some small way with the important work these heroes do every day, to somehow repay a tiny portion of the personal debt I owe to them. For now, my children and I will continue to say a prayer for them each night as we have for two years, and hope that karma is real. Truly, these people deserve only good things.

And one more thank you to someone I will never be able to call by name. Thank you to the stem cell donor who gave us hope. Your magical stem cells did, in fact, cure Martin's cancer. Sadly, his immune system just wasn't yet ready to fight hard enough when he got pneumonia. You gave us a miracle. Thank you, whoever and wherever you are. My children and I pray for you every night, and always will.